“The addition of tumor-treated fields to standard therapy with temozolomide prolonged deterioration-free survival without negatively influencing health-related quality of life among patients with glioblastoma, according to a secondary analysis of a phase 3 clinical trial published in JAMA Oncology.

“However, tumor-treating fields, or TTFields (Optune, Novocure) — alternating electrical fields delivered via four transducer arrays at an intermediate frequency of 200 MHz (1-3 V/cm) placed on the shaved scalp of patients and connected to a portable medical device — also caused skin irritation in more than half of patients.”

“Treatment with lomustine (Gleostine) plus bevacizumab (Avastin) provided a slightly improved progression-free survival (PFS), but did not demonstrate an overall survival (OS) advantage over treatment with lomustine alone in patients with progressive glioblastoma, according to results of a randomized phase III trial published in theNew England Journal of Medicine.

“There were a total of 329 OS events (75.3%) in patients who received the combination, which did not meet the endpoint for a statistically significant benefit. The median OS was 9.1 months (95% CI, 8.1-10.1) in the group of patients who received the combination of lomustine and bevacizumab and 8.6 months (95% CI, 7.6-10.4) in the monotherapy group (HR, 0.95; 95% CI, 0.74-1.21). Locally assessed PFS was 4.2 months in the combination group versus 1.5 months in the monotherapy group (HR, 0.49; 95% CI, 0.39-0.61).”

“People diagnosed with cancer understandably reach for the very best that medical science has to offer. That motivation is increasingly driving people to ask to have the DNA of their tumors sequenced. And while that’s useful for some malignancies, the hype of precision medicine for cancer is getting far ahead of the facts.

“It’s easy to understand why that’s the case. When you hear stories about the use of DNA sequencing to create individualized cancer treatment, chances are they are uplifting stories. Like that of Ben Stern.”

“Diffusion Pharmaceuticals Inc. DFFN, +2.38% (“Diffusion” or “the Company”), a clinical-stage biotechnology company focused on extending the life expectancy of cancer patients, today announced that a Phase 3 clinical trial using its lead small molecule trans sodium crocetinate (“TSC”) in patients with newly-diagnosed inoperable glioblastoma multiforme (“GBM”) brain cancer, is now open for enrollment. The trial, which has been named INTACT (INvestigating Tsc Against Cancerous Tumors), follows a previous Phase 2 GBM study in which the inoperable patient subgroup showed a nearly four-fold increase in survival compared with historical controls when TSC was added to their treatment regimen (40% alive at two years vs. 10.4%). TSC’s innovative mechanism of action affects the tumor micro-environment, making treatment-resistant cancer cells more susceptible to the tumor-killing power of conventional radiation therapy (“RT”) and chemotherapy (temozolomide) by re-oxygenation of the hypoxic portion of the tumor. The Company believes that a largely intact GBM tumor vasculature with limited surgical resection is conducive to TSC’s tumor re-oxygenation properties, and that this contributed to the survival increase in the Phase 2 GBM inoperable patient subgroup.”

“The addition of tumor-treating fields to maintenance temozolomide chemotherapy significantly delayed progression and improved overall survival in patients with glioblastoma who had received standard radiochemotherapy compared with maintenance temozolomide alone, according to final results of a trial published in JAMA.

“The addition of tumor-treating fields to maintenance temozolomide chemotherapy significantly delayed progression and improved overall survival in patients with glioblastoma who had received standard radiochemotherapy compared with maintenance temozolomide alone, according to final results of a trial published in JAMA.

“Glioblastoma, the most common and aggressive form of brain cancer, typically fails to respond to treatment or rapidly becomes drug resistant. In a paper published online in the journal Cancer Cell on November 30, University of California San Diego School of Medicine researchers identified a strategy that pinpoints a genetically distinct subpopulation of patients with glioblastoma that is particularly sensitive to drugs like cilengitide that target a cell adhesion receptor known as integrin αvβ3.

“Cilengitide was developed based on early studies by David Cheresh, PhD, Distinguished Professor of Pathology at UC San Diego School of Medicine, and colleagues who demonstrated that αvβ3 expression was linked to the progression of glioblastoma. The drug was tested in clinical trials but production was halted in 2014 when it failed to show significant improvement in overall survival among participants during phase III trials.”

“A drug that spurs cancer cells to self-destruct has been cleared for use in a clinical trial of patients with anaplastic astrocytoma, a rare malignant brain tumor, and glioblastoma multiforme, an aggressive late-stage cancer of the brain. This phase Ib trial will determine if the experimental drug PAC-1 can be used safely in combination with a standard brain-cancer chemotherapy drug, temozolomide.

“The trial is approved for patients who have seen their cancer progress after first-line therapy. This is an extension of an ongoing human phase I clinical trial of PAC-1 alone in patients with various late-stage cancers. Phase I trials are designed to test the safety of new drugs in human patients.”

On the day after Christmas of 2014, Adam Hayden experienced his first strange “episode.”

“We had just carried all the presents upstairs, and as I was walking towards our bedroom I was struck by this strange lightheadedness that I hadn’t experienced before,” he says. “I didn’t collapse, I didn’t pass out, I just kind of folded down to the ground.”

Adam and his wife Whitney, parents of three young children, chalked up the incident to holiday stress. But over the next year and a half, he kept having similar inexplicable episodes. Finally, in May of 2016, an MRI scan revealed a 71-milimeter tumor in the parietal lobe of Adam’s brain. The episodes had been seizures—symptoms of the tumor.

“When you have an MRI scan like that, things start to move really quickly,” Adam says. A few days after the scan, he was in the operating room to remove the tumor. The impact of the surgery on his brain left him in a wheelchair, and he needed intensive physical therapy to restore his ability to walk.

Meanwhile, Adam’s tumor tissue was analyzed, and on June 10, 2016, he received a diagnosis of glioblastoma. He began a standard treatment protocol of initial chemotherapy and radiotherapy followed by a long-term, 11-cycle chemotherapy regimen to keep the tumor from growing back.

“My oncologist said we could go to 12 cycles of maintenance chemo, but there has not been a randomized controlled trial validating that more is better, so taking the side effects into account, my wife and I decided to stop at 11 cycles,” Adam says. “That was in July, and I have not been on any active treatment since then.”

In late 2016, Adam’s oncologist suggested that he supplement his standard treatment with Optune, a device that had recently been approved by the U.S. Food and Drug Administration. Optune is a portable device worn on the head that produces an electrical field intended to disrupt cell division, thereby preventing tumor growth.

Adam says that his experience with Optune’s manufacturers was “terrific,” and he used the device for over two months. Ultimately, however, he and his wife decided it wasn’t for them.

“What the clinical trials show is that Optune provides a median of five months’ extra survival, sometimes much more and sometimes less, depending on the patient,” Adam says. “But the kids were afraid of how it looked, it was cumbersome to handle, and it was just an obstacle to daily living, so after hours and hours of talking about it, we made the decision to discontinue.”

Writing as medicine

As a graduate-trained philosopher with a penchant for writing, Adam was compelled to document his glioblastoma experience on a blog he named Glioblastology. He credits his father and grandfather, both pastors, with instilling him with a knack for storytelling.

“My grandfather was a loud, larger-than-life figure with a belly laugh, and storytelling was commonplace around the dinner table any time we visited,” Adam says. So when Adam received his glioblastoma diagnosis, he says, it felt natural to share his story online.

“People say, ‘it’s really courageous of you to live your journey publicly,’ but I was already living on social media, and it would have been stranger if I dropped off the map.”

Adam started writing immediately. “The day after my surgery, as soon as I could lift my head off the pillow, I asked my wife, ‘where’s my journal?’ ” he says. “It was therapeutic for me to write and tell my story.”

But Adam worried that he’d lose his readers’ interest if he just told his story over and over again. So he began to use his blog to put his story into a different context. “I began to write with the goal of teaching clinicians, patients, and others how to find value in their experiences.”

After publishing many posts, Adam was thrilled to discover that what he was doing on his blog—and what so many other cancer patients do—had a name: narrative medicine. In this approach, narrative structure is applied to patients’ experiences with illness and treatment in an effort to enhance the healing process.

Adam became especially interested in the works of narrative medicine practitioner Rita Charon, MD, at Columbia University. After studying Charon’s work, Adam was honored to present at a medical ethics conference, with Charon in the audience. An example of Adam’s take on narrative medicine is featured in his guest post at the science communication blog, PLOS SciComm.

Adam is actively involved in brain tumor and narrative medicine communities, including the National Brain Tumor Society, and he has shared his perspective in many presentations and publications. Recently, he wrote an open letter to Senator John McCain after news broke of McCain’s own glioblastoma diagnosis.

Over the course of his treatment, Adam has also found valuable support in the #BTSM (Brain Tumor Social Media) community on Twitter, which was co-created by fellow brain tumor patients Liz Salmi and Charlie Blotner. Community members interact with each other regularly by tagging their tweets with “#BTSM” and by participating in live monthly tweet chats, which Adam now co-moderates.

“If there’s something that you’re wondering about or that you think others in the brain tumor space could learn from, you can tweet it and tag it with #BTSM, and you’ll get thoughts and support from the community,” Adam says.

Thinking and talking about brain cancer

Adam says that his background in philosophy has helped shape his approach to glioblastoma treatment. As a graduate student studying the philosophy of science, he developed an acute sense of the limits of human knowledge and understanding.

“I was equipped with this humble way of viewing scientific theories that taught me to ask questions and never be too confident in the answers, knowing that throughout history, our theories have been evolving,” Adam says.

“So when I received my diagnosis, I was able to push past the doom of wondering what would happen to me. I realized that I didn’t have to be defined by whatever I was reading about the latest glioblastoma research since it is always transforming, and I could focus on how I would approach it.”

Adam has also taken a thoughtful approach to discussing brain cancer with his kids. He has found ways to frame his disease using words and ideas his kids can understand, instead of avoiding the topic altogether.

For instance, when Adam was recovering from his surgery, his five-year-old son expressed his concern about his dad’s wellbeing. Off the top of his head, Adam came up with the idea to compare his surgical incision and staples to a knee-scrape—a concept familiar to most kids.

“We talked about what happens when you fall and skin your knee; you put a Band-Aid on it and it scabs, and after a while the scab falls off,” Adam says. “So I told him, ‘that’s going to happen with daddy’s head.’ ”

Adam says he would advise other parents with cancer to be honest and frame things in terms of their kids’ level of understanding.

The “invisibility” of brain cancer

Despite his advanced diagnosis, Adam has not experienced many of the symptoms commonly associated with glioblastoma.

“So many people in the brain tumor community have suffered language processing issues, cognitive impairment, and more as a result of either the tumor or the treatment,” he says. “Fortunately I have tolerated treatment well, and while I do have some motor and sensory symptoms, I’m just about as sharp as I’ve always been.” Adam and his wife have connected with a palliative care doctor to proactively prepare themselves for cognitive decline, a near universal symptom of disease progression for people living with a malignant brain tumor.

The seizures that portended his diagnosis still play a big role in his life. Specifically, Adam regularly experiences focal seizures, in which he gets lightheaded and dizzy with tingling, numbness, and weakness on the left side of his body. The seizures are more likely to occur if he has been working hard, such as by writing.

“I can feel the onset of a seizure pretty well,” Adam says. “I know what my triggers are, and I remind myself to schedule my days around that.” Medication is also helpful in preventing seizures, but Adam notes that many fellow brain tumor patients find these treatments prohibitively expensive.

With his symptoms well-controlled, Adam is often reminded that people tend to assume that everyone they meet is healthy and able-bodied, unless they see an obvious sign otherwise.

“Most people’s picture of a cancer patient is someone who is sickly, thin, and nauseated,” Adam says. “What I try to highlight often in my presentations is that with brain cancer, we may look pretty good on the surface, even though we’re sick. We need to be cognizant of people’s visible disabilities, but also invisible disabilities that don’t always present themselves as obviously.”

Super Patients are cancer survivors who learned to be more engaged in their own care. Cancer Commons believes every patient can be a Super Patient or benefit from a Super Caregiver or Super Advocate. We hope these stories will provide inspiration and hope for your or your loved one’s own treatment journey.